Lupus

Three weeks ago, I was diagnosed with Lupus. There are three severities of Lupus: mild, moderate, and severe. Mine straddles the line between mild and moderate. It’s not curable, but it’s manageable.

I didn’t see it coming. But in retrospect, it makes perfect sense. And in all likelihood, I’ve had it for a long while.

A few years ago, I was diagnosed with a rare skin inflammation called Paniculitis & Vasculitis. Lupus is characterized as internal tissue inflammation due to a compromised immune system. In essence, my white blood cells are malfunctioning, attacking my own red blood cells and other healthy tissue. Now we know that the cause of the skin disorder was very likely Lupus.

I’ve had Fibromyalgia most of my life. Or has it been Lupus all along? Both are part of the same disorder family. My rheumatologist says we’ll never know for sure, but there’s a 50/50 chance that it’s been Lupus all along.

Earlier this year, around March or April I think, I made an appointment to see my regular doctor. Something was wrong with me, and I didn’t know what. I was experiencing more pain and weariness than usual, my attitude and personality were all over the map, and I just didn’t feel like myself. (One of the side effects of living with chronic pain is that you become very attuned to how you feel, physically. If something’s off, you know it immediately, even if you can’t pinpoint what it is.) I could tell that something inside me was very wrong. Tests were run, nothing out of the ordinary was found. The doctor wrote the whole thing off, but I remained quietly convinced that something was wrong.

Months passed, and though I said nothing, I was gradually finding it harder and harder to work. It wasn’t a big secret, I just didn’t know how to explain it. I still don’t. I’ve always been Mr. Focus. When everyone else’s minds are wandering off, I’m the one that stays on point. I sit down, I zero in on the task at hand, I close off the rest of the world, and I get it done. It was alarming when that skill started to evaporate. I would brush it off and attribute it to lack of sleep or “bad Fibro days,” but as it became more and more common and my work suffered continually for it, my self-worth took a nosedive. I’m an achiever, so an inability to accomplish anything pushed me into a state of unending frustration.

One of my swollen feet from about a month ago.

About two and a half months ago, I started experiencing a new pain coming from the tops of my feet. I’d never heard of such a thing, and thought it was really weird. Over the next couple of weeks, the pain spread from my feet to my hands and all of the joints in between. My feet and hands began to swell. They’d start out okay in the morning, but by evening they’d look like the Michelin Man’s hands and feet. Especially my feet. They were the worst. As the swelling increased, so did the pain.

Four weeks ago, this swelling and pain finally convinced my rheumatologist that something was very wrong. I’d seen her a month prior, but she’d written it all off as a reaction to an unrelated medication. This time, she couldn’t so easily dismiss it. I was in extreme pain and at the very end of my rope. She ordered a bunch of expensive tests like cardiograms and ultrasounds, as well as a full blood panel.

The next week, her nurse called to give me the news. The various big tests had all come back fine, but the blood panel told the tale: it was Lupus.

I was shocked. And also… kind of not. The more I read about Lupus and learn about what it is, the more sense it makes. It just adds up. All of it, going back for years. And as odd as it sounds, there was this unmistakeable feeling of relief. I wasn’t relieved to have Lupus. I don’t want Lupus. It’s no fun. But I was relieved to finally know. For the first time, I had a name to put to it, and it wasn’t some vague, weird thing that no one has ever heard of.

When I was a teenager, I was diagnosed with Gastroesophageal Reflux Disease. Today, this is known by the more common name Acid Reflux. At the time no one had ever heard of it, so I spent a lot of time explaining what it was. Then came Fibromyalgia, which again, no one had heard of and required lots of explaining. Paniculitis & Vasculitis, same deal. There have been other things over the years, weird things that popped up in between all the rest, stuff that defied simple explanations.

The “vague meter” has been dialed up all my life, and now for the first time, there’s something that not only provides a potentially all-encompassing explanation, but which dials the vague meter all the way down. It never felt more “real” than it does now, and I know for certain that I’m not nuts. All sorts of thoughts go through your mind when something’s so wrong and the doctors can’t find anything. Was I paranoid? Was I a hypochondriac? Was I crazy?

Now I know for certain that it’s very real.

Now, my family and I are adjusting to a new normal. I’m not an invalid, and I’m not handicapped. But I’m learning that my daily energy and strength allotments are very finite. The chronic pain is still as present as ever, headaches come and go, and sleep is always a major challenge. And my immune system is compromised, so as I write this, I’m dealing with a sinus infection and pink eye. (Looking back, I’ve averaged about two or three sinus infections a year. Finally I know why I get sick so easily.) More than anything, my life has slowed way down. My blog-for-hire work has decreased significantly (and a big thanks to the folks at Splashpress Media for being so gracious and understanding), but my fiction writing has actually had cause to pick up.

About the same time all those awful tests were being run, a wonderful new opportunity came my way. I’ve signed a new book contract! Coming next April is a new big-screen movie called Persecuted, written and directed by the talented Daniel Lusko. It stars James Remar, Bruce Davison, Fred Dalton Thompson, Brad Stine, Natalie Grant, and Dean Stockwell. I’ve seen the movie, and it’s good — really good. And yours truly is writing the official novelization for Bethany House Publishers. The full-length novel, which expands the story significantly, will be available around the same time that the movie comes out. So I’m working on that right now.

And since my ability to work has been reduced, we’re praying that this fantastic opportunity will open doors to many more. Please join us in praying for this.

A few quick updates:

Octane, the motion comic, is still in production. I haven’t heard a release date yet, but what I’ve seen of it looks spectacular.

The ‘Naturals: Season 2 is temporarily on hold because of my situation. The other authors are being super gracious in allowing me time to deal with this major life change. We hope to get back into it early in the new year.

The Secret Door, aka the sequel to Corridor, is still happening, but all of my time is being poured into Persecuted right now, so The Secret Door will now arrive sometime in 2014. I don’t know exactly when. It’ll be released when I finish it.

Bethany House has a killer promotion going on where you can get ebook editions of Offworld, Nightmare, and Vigilante for just $8 combined. Offworld is a free download, and the other two are available for $4 each. Amazing, huh? It’s the perfect chance to complete your collection! See my entire catalog of books here. They make great Christmas gifts! (That was subtle, right?)

2013 has been a weird year. As I said, I didn’t see any of this coming. But I’m still here. We’ve seen endless blessings and God has been so faithful time and time again. He has shown us so many times that he cares even about the littlest things. He has seen me through this journey, and although this is definitely a turning point, the beginning of a new chapter in my life, I know he will carry me all the way through.

I could not survive without my family, most especially my patient, thoughtful, beautiful wife Karen, who walks side-by-side with me in all of this and has picked up the slack from my downtime without a single complaint. She is amazing, and I could not do any of this without her.

Happy Thanksgiving, Merry Christmas, and my heartfelt love and gratitude to you all.

I’ve been living with Lupus for 30 years, and I certainly know what you are going thru. Take it one day at a time .. there will be new medications discovered to treat this disease. Prayers for you and your family.

As a Lupus Patient of 40 years I still remember all the first couple of years and the adjustments that had to be done. A it is not just by chance that you are an overachiever most SLE patients I have meant are. I will add you to my pray list. God will help you more the next few years but you also have to help control this crazy thing inside of us by learning to live with it and never let it over control your life. Also your family should know and understand all the changes you will go threw both mentally and physically. God be with you and your family always. Will find one of your books and read it I am always looking for new authors

By the way 40 years ago at the age of 22 the Doctors said I more than likely would be dead before 25, very few medication to work with at that time will we have done it. I am now 65 but only because they are working on things all the time and someday people will not have to just accept it we will be able to beat it.